guest post!: i am sam

kerri —  July 15, 2014 — Leave a comment

Sam and I sitting on the floor practicing [my] shot put form.Sam and I met one day in the Accessibility Resource Centre last Winter (because it took until my fifth year of university to identify as a student with a disability, and then make a bunch of friends in the ARC). Not long later, a shot put lesson possibly happened on the floor one afternoon [see picture]. Another day, we went to the gym, where (God knows why) Sam had me chucking a medicine ball at him repeatedly while I did bosu supermans and yes 97% of these throws non-intentionally hit him in the man parts. I’m not even trying to make myself sound nice with the non-intentionality because seriously, I am not good at accuracy. Also one day we explored Toys R Us, then a thrift store, to find a stuffed pig to make him fly.

Like so:

Anyways, there’s my back story [stories?] about Sam.

Now it’s his turn to tell you his own story–many aspects which he and I have parallel views on even if we didn’t know it yet. Thanks, Sam!

———-

I am Sam. Sam I am – without the joys of green eggs and ham.

I was born in 1990 with Myelomeningocele – commonly referred to as Spina Bifida. Medically speaking, it is a defect in my spine that has rendered my legs rather useless, and has left me confined to a wheelchair. However, thanks to my parents and my upbringing, my wheelchair was rather invisible to me until Junior High School when social classes become more important.

While my preamble makes disability sound like a horrible thing, it actually has taught me some important life lessons that simply cannot be taught by another person. These lessons include the power of sport, the importance of community, the strength of advocacy, and patience.

The first lesson is advocacy. This lesson is two-fold; one for knowing how to advocate for your person and the other is to advocate for a better life. While they seem all the same, the later is to advocate for a society that benefits all. Advocacy and patience goes hand in hand because while you know what’s needed to change for full inclusion of all members of society, you consciously know it isn’t going to happen today, or tomorrow, or this year. It’s hard to advocate for change when you can’t see it, but it remains an important feat as change wouldn’t occur without those efforts. The advocacy for one’s person though is a more gratifying form, as results are generally seen and noticeable. While becoming a product of Child and Family Services in my late teen years – I learn this lesson rather quickly. There, a system, which is designed for my protection, was attempting to charge me, a paraplegic from the waist down, with assault for kicking someone. Clearly, I couldn’t let this pass by.

Patience is another thing that I’ve learned, and although a lot of it is learned through advocating for better accessibility, the other aspects in life that have required it is in health and in love. Medically, things don’t always go according to plan – and usually, it is just out of your control. Love is the same way. It takes a special person to accept a disability and to love the individual for who they are. Society is too caught up with the media-influenced attributes and preference isn’t given to the person for who they are. And although this special person comes along, you still need to be patient with them as it takes time for them to learn and to understand – and that time we generally undervalue.

Sport is another huge part as it gives a person with a disability an opportunity to tangibly achieve something that is comparative to their able-bodied counterparts. Athleticism is a measurable attribute, however, the comradery that comes with disabled sport is equally important. Here, there is a community that is entrenched, and willing to support you in many ways. You are now one in the same, and that is incredibly powerful.

We often look at the negatives of disability – the what we can’t do, or the what ifs, or the what it could’ve been. However, looking through a lens of how disability can shape an individual is an intriguing perspective. Here, lessons of love, understanding, caring, comradery, patience, can embody these people. However, the comprehensive understanding of these lessons doesn’t make an individual exceptional – but instead, just simply shows the desire to have a good life. Disabled or not, we embody and share those desires. I share these lessons because disability isn’t just negative – it has become a part of my identity. Without my disability, I am not sure if I would be as humble as I am today, or if I would be as accepting of people who face comparable adversities.

So when you see Sam I Am wheeling down the street, pushing with all his might with groceries in tow – just remember, they are just as heavy sitting down as they are standing up.

———-

Sam is a business administration student about to complete his final year in his degree. Sam can occasionally be found singing and playing the piano in front of downtown Winnipeg establishments while waiting for the bus [except not now because they removed most of them. The pianos, I mean], but more often right now you’ll find him with a tennis racket. Sam is a multi-sport athlete (it’s a long list, but let’s just say he’s working at getting me out for wheelchair tennis, basketball and para-athletics. And I’m sure sledge hockey when the city freezes over again), and is active in promoting wheelchair sport to the community.

You can connect with Sam on Twitter at @samunrau–and, Sam has just started a blog so new that nothing is really on there, so you should probably go Roll Along With Sam–even if a suspenseful ride at present!

There are a few things I have opinions on—a lot of the time I just shut up, but sometimes I get argumentative, and sometimes I get argumentative about my opinions with people on Twitter. We are usually quite civil about it, but this is the first time I ended up reviewing a book out of the scenario. I connected with author Lira Brannon last week—connected is a nice term, in retrospect, I did interrogate her a bit about the “inspirational” nature of her book A Different Kind of Cheerleader, and the type of “inspirational”-ism that was implied, as the book is both centred around disability and Christianity. As I said on Twitter, “Disability isn’t inspiration: it’s life”. Lira, however, dealt with my interrogation well, and when I asked if I could receive an electronic copy of the book for free in exchange for a review on my blog, she agreed and quickly hooked me up with a Kindle download code.

Trigger warning: The later aspects of this review mention self-harm and suicide.

Three-sentence summary: 
The main character, Tansy, is a thirteen-year-old with a spinal cord injury [SCI] from a skateboarding accident in her childhood. Now a paraplegic, Tansy has all but abandoned the dream she and her best friend share of successfully qualifying for their junior-high cheerleading squad. As she starts junior high, she is introduced to a variety of new people who change her perceptions about what she believes she is capable of—and what she thinks about God, and who she was created to be, and to become.

Target age:
I’d throw this one in the 10 to 15 age-range—but, I personally enjoy teen fiction, so go with what works for you/the kid you’re trying to buy a book for.

Thoughts:
Overall, while the core aspects of the plot were fairly predictable, there were enough twists in the core of it to keep me interested and guessing—I started reading the book late Thursday evening, kept going until 1:30 AM, and finished it off the next morning [and people, my Concerta would have worn off at 11:30 or so—it was the book keeping me going].

While the core aspects of the book include Tansy’s desire to become a cheerleader independent of her disability, the author paints a very clear picture of the rest of Tansy’s life: starting at a new school and dealing with how her teachers respond to a student using a wheelchair (i.e. the typical ‘I can’t walk, but I can hear’); Tansy’s feelings towards her disability (anger, resentment, and eventually acceptance); responding to how her friends perceive her disability; relationships with her mother, brother, friends, physical therapist; and how her SCI and using a wheelchair pose additional contemplations within the already complicated life of an adolescent trying to figure out her place in the world.

Though I slated the book for younger ages, there are some themes including self-injury, attempted suicide, and suicidal ideation present in the book that may be more suitable for slightly older readers. The mentions of these aspects are brief, however, they were a source of confusion for me as I didn’t think there was enough detail preceding or explaining the circumstances in which Tansy’s acquaintance from rehab, Meg, was hospitalized following a suicide attempt (this may require a re-read on my part). While not comorbid, I appreciated that the author intentionally mentioned the mental health aspects associated with living with a disability and/or following a traumatic injury.

The storyline brings Tansy to interact with a variety of people who become a part of the bigger story unfolding—pressures from different people lead her different directions: some into finding the confidence to try out for cheer, others who cross her path in unexpected ways that help teach her about God—and through these conversations, more about the people around her. While some characters seemed slightly out-of-place [i.e. I don’t care if he’s the coach’s son, why the heck is the youth pastor hanging out in the middle school gym and at cheer tryouts all the time?], for the most part, the interaction of the themes surrounding Tansy’s daily life learning to more fully coexist with her disability, and the journey towards believing in God, was well structured.

I thought, despite all the #inspiration[al] tags, that overall the author did a decent job at not sensationalizing Tansy’s accomplishments, and allowing her to both succeed and screw up as much as a character without a disability would have, with a few exceptions of circumstances that wouldn’t have arisen if not for Tansy’s disability […which obviously is realistic]. In terms of the realism of integrating Tansy into the cheer team, I [being an adapted physical activity nerd] felt that Lira addressed the types of “wheelchair tricks” Tansy was able to learn well, but would have enjoyed reading more about how she became a true team member and not just a possible story of oh you’re in a wheelchair, we’ll let you on the team even though you blah blah blah through more concrete examples of how she used her chair as an asset and not an inspiration–such as how she would be integrated into team and more gymnastic-type and how existing routines were adapted. But, like I said, I’m a nerd that way.

Reading Guide:
A question guide is provided in the back of the book, which prompts the reader [or an educator or youth leader, etc.] to reflect on what they’ve read. The questions are evenly distributed between faith, friends, family, and Tansy’s disability. Though I never use reading guides on my own [because, what is this, school?], it’s definitely a nice bonus feature.

Recommendation:
A Different Kind of Cheerleader is geared towards older-school aged kids and younger-teens—an easily approachable read, with enough plot twists and serious/more mature themes to keep older readers engaged Cheerleader would be a great way to approach the topic of disability in a variety of settings. As both faith and disability are core-topics [and often very confusing], I’d recommend younger kids (under 12) be supported through reading this book, by a parent, mentor or educator, to best facilitate learning and enabling kids to ask questions and form a better understanding of their own thoughts on both core themes.

Final thoughts:
A Different Kind of Cheerleader is an approachable and engaging book for readers in their younger teens [and, if you’re me, early twenties], presenting a variety of opportunities for critical thought on faith and disability. With multiple quick unexpected turns in the plot, Cheerleader is easy to get lost in for a few hours, and would be a suitable way to begin a discussion on teens’ thoughts on what it means to live with a disability—and hopefully, one that can help realistically assist them in contemplating how to restructure their thoughts on a variety of different topics.

A Different Kind of Cheerleader can be found on Amazon. You can learn more about Lira on her website, and through connecting with her on Twitter and Facebook.

Disclosure: I received a free electronic copy of the book, A Different Kind of Cheerleader, from the author, Lira Brannon, which I offered to review prior to finalizing the agreement. I was under no obligation to provide a favourable review.

i crossed a line five years in the making
that the biggest eraser can’t clear.

–this is the sweetest little song, butch walker. 

 
 Photo credit to Amber

Five years, and far more stories than I would have ever imagined.
Today, I close this chapter in the story and move on to the next one, with the storyline embedded deep within me.
 
These five years are worth far more than a piece of paper and these pictures. The last five years are the story, the experiences, the process. And this day, this piece of paper may symbolize that I can put the things I know onto papers and into practice, but only to an extent.
The degree, Bachelor of Physical and Health Education, implies much about what I have learned outside of myself: in no way can those six words even begin to indicate what I learned inside myself and what I—and those around me sharing this story–changed inside myself. And that the change inside me is far more crucial to my ability to connect with others than most things I could ever be assessed on.
 
The last five years are not about this moment: they are about the collection moments that lead me here.

connect the dots there is a picture in these lines
my favourite parts of life are in the nights of better sleep i never find.
but even if i don’t decide to chase my dreams, i won’t throw them away
[…] i won’t forget everything i wen through to get here
but i haven’t decided if here is quite where i belong.
—where i belong, farewell fighter
 
 
They are about the process.
 
 
 
The people.
 
 
 
 
 
Photo credit to Becki
 
 
 
The story.
 
 
And what’s ahead.
 
Note: I’ll be updating this post with more pictures/quotes over the next few days… Check back :].

Though I lacked a formal term in my lexicon, the concept of “neurodiversity” (though somewhat controversial) is one that I’ve appreciated since long before my own ADHD/LD diagnosis. Typically, neurodiversity is seen as a concept that seeks to portray a variety of neurologically based “disorders” simply as variations—these include ADHD, autism spectrum disorders and Tourette syndrome, as well as specific learning disabilitiesAnother condition under the umbrella is dyspraxia—one that is probably less generally understood than several others on the list. 

I connected with Katherine (whom I always refer to, in my head and out loud, as Kat) several years ago—we connected initially over asthma, but that’s a rarer discussion topic at this point! More often, we’re planning adventures, spending several hours on Skype telling stories, discussing school, or making mug cake (yes, we made mug cake together on Skype—the level of coaching I required was ridiculous, and Kat’s a good person who didn’t make fun of me—too much :).]

Today, Kat is sharing her perspective as an adult with dyspraxia—a developmental delay affecting motor coordination. Dyspraxia is seldom discussed in the context of adulthood, so I’m excited to have Kat here today!

———-

Hello, my name is Katherine and…

I am a computer programmer.

I am learning American Sign Language.

I am a knitter.

I am a book worm.

I am a condo owner.

I am a Cardinals baseball fan.

I am dyspraxic.

My story of life as a grown up is much the same as any other 25 year old female living in the midwestern United States. I do exciting things like go to work, cook dinner, hang out with friends, and explore diverse and varied interests. However, my brain and I occupy a different motor skills space than yours most likely does. In the early/mid 90′s when I was a preschooler/grade schooler I had motor skill developmental delays. At the time the doctors called it dysfunctional/disordered motor planning, at the time new politically correct version of “clumsy child syndrome” which is now commonly know as dyspraxia. Basically my neurons don’t always connect my muscles to my brain well. Sometimes the message gets through and my body works just fine, other times it gets lost along the way. My writing skills are slow, painful, and took exceedingly long to develop. PE was my least favorite class ever; they always passed me but noted a need for improvement of coordination in activities like running, skipping, and jump rope.

In some ways getting to high school, college, and now the “real world” is easier. I’m no longer graded on my penmanship, and no one expects me to write in cursive. Nor does socialization involve jumping double dutch, although walking in heels is equally perilous. The majority of my work and other written communication is keyed out on a qwerty keyboard of some sort. While learning to type was a challenge initially I’ve taken to keying by touch much better than I ever had to writing. You won’t hear many stories like mine because I’m from the US, seemingly few dyspraxics exist Stateside (UK seems to have cornered the market). Also much more common in males for whatever reason. I’m a grown adult who has found a successful contributory place in society.

The voice of adults with developmental delays is seemingly nonexistent. Not because we aren’t here, and no, we didn’t outgrow it. Turning 18, 21 or any other arbitrary age doesn’t magically catch you up to your peers. Some of it is that we’ve learned how to adapt our lifestyles to avoid skills we haven’t mastered. My cooking has never been dinner party elegant but it tastes just dandy. I’ve found cooking implements that don’t require lots of coordination to work (OXO make some real winners at least for me). I drive a stick shift car of the same brand as i first learned on (so it has the same sized gear box with a clutch that “grabs” similarly). If I’m tired or have a mentally stimulating day ahead of me I don’t drive. Quite simply, while I can drive it takes quite a bit of mental concentration to drive, follow the assigned route and otherwise be attentive to my surroundings. Somedays this is more than I should really take on. I know my limits and live close to a transit loop. My life looks like that of the neurotypical adult because pick surroundings and activities that suit my needs and abilities.

Life is learning and growing and changing the world around you to make it work. Taking it in stride when you trip over your own feet stone cold sober in trainers.

—–

Kat has a degree in computer science and works as a programmer—she is pursuing American Sign Language as a personal interest (but in the very ambitious form of evening university classes—and watching the videos for my Disability Studies class in the Fall). Kat’s “diverse and varied interests” include several different fitness pursuits (running, cycling, swimming . . . ahem, triathlon :] . . .), making me jealous as she goes to Chicago, and crafty stuff like knitting and—though, I think this has culminated—having all sorts of condo do-it-yourself shenanigans.  

Kat can be found on Twitter as @kat314159 […yes. That is pi there. No, not that kind of pie].

twenty two: spinning.

kerri —  May 20, 2014 — Leave a comment

and i scratched these words into a black notebook…

last straw, jack’s mannequin

There are so many unexpected ironies included in those lyrics with what was to come—foreshadowing.
i’m one year older now since the last time I saw you in case you wanna know, i’m about to say what i’m up to.
first of all i’m a sluggard, moving slow in a clumsy way
some peace of mind is what i want, but that will be the day.
i’ve been going without fault for so long, and this must end
running round in circles, i’ve been so far from myself
searching for the energy, and the time to make a change
to make a change in my life, instead of watching it pass by
do something now while i’m alive
 
i’m twenty-two, don’t know what i’m supposed to do
or how to be, to get some more out of me
i’m twenty-two, so far away from all my dreams
i’m twenty-two, twenty-two–feeling blue
 
[…]
afraid that i will be weak forever
i can’t stay in this shape any longer
my life’s just another cliche
 
twenty-two, millencolin
As I did of 2013 when 2014 started, I refuse to recap my twenty-second year: It was important, it changed me, but that change did not occur through circumstances I chose. It was important to me—it still is important to me—to share those stories, to be transparent, for a variety of reasons. Among the most important, though, can be summarized concisely in my friend Jay’s words: “We cannot control our circumstances, only our responses to them”.

i’m keeping quiet until the phone stops ringing  lately it’s hard to disconnect, i just want something real i’ll find my words if i can just stop thinking the room is spinning, i have got no choice be patient, i am getting to the point… 

spinning, jack’s mannequin

I grew, I came out on top with a few more scars inside me.
you watched that poor girl waste the best years of her life and i’ll be damned if i am going out i will not go out that way.
last straw, jack’s mannequin.
I’m alive and determined to make this count.

i can’t remember when the earth turned slowly so i just waited with the lights turned out again i lost my place, but i can’t stop this story 

Tomorrow, I turn twenty-three.
i keep forgetting when the earth turned slowly so i just waited till the lights come on again i lost my place but i can’t stop this story i found my way, but until then i’m only spinning 
spinning, jack’s mannequin.

a year ago today

kerri —  May 6, 2014 — 6 Comments

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day.  After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.

I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.

Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.


If you make a mistake, press star

As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.

(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)

I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.

I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.

“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”

Press 1.

“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”

I am pretty sure pressing star will not help me.

Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.

Press 2.

 

I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.

It makes sense if you have chronic disease!

start over again.

kerri —  January 8, 2014 — 6 Comments

move from the past to the present tense: you can start over again.

start over again, addison road

2014.

I am usually not big into anything attached to a new year—it’s another overhyped occasion that literally means nothing—in the words of Bryce Avary, “Who says it has to be a new year to start a new year?” I try to start again every single day—because each time I do, I hopefully find myself farther away from where I was and closer to where I’m going. Unlike most years, I didn’t do a recap post on December 31st—I know I still will in my head, but I refuse to re-live last year again in writing.

I’m starting over. Again.

I’m alive.

2013 soundtrack: part three.

kerri —  December 30, 2013 — 1 Comment

The original post in this series can be found here—the recap of that discussion can be found here. The second set of tracks can be found here.

Previous tracks: The Resolution – Jack’s Mannequin, Even if it Kills Me – Motion City Soundtrack, Feeling Good – Muse (cover), Typical – MUTEMATH, Workin’ it Out – Hilary Duff, The Year of Discovery – Tess Dunn, Caves – Jack’s Mannequin, Twenty Two – Millencolin, Diane the Skyscraper – Jack’s Mannequin, Weightless – All Time Low, Watch the Sky – Something Corporate, I Swear This Place is Haunted – A Skylit Drive.

I cut the last post off in July—from the point of August on, even though the battle had yet to begin again in September and was nowhere near over, the vibe of the tracks shift to recovery. 


Rise – A Skylit Drive

I wrote in mid-July about feeling like a grenade. Rise was a response to that–

some days i feel like a loaded gun / i paint a target on everyone […]

some days i feel like i’m fucking done / i’m waging war against everyone / it’s killing me, like it’s killing you / what’s done is done, what will you do?

–but also to freedom from that feeling, even if briefly. From February through September, August was the only good month—the only month that I felt healthy, like I could do what I wanted. Like things were falling into place. I went through August with no ER visits, no blood transfusions, and only scheduled doctors’ visits. I started Concerta for ADHD, and I could feel my world changing for the better as a result.  I went to Vancouver—I left my surroundings, I felt more free than I had in months.

run / you think you’re running away: i think you’re running in place / i’ve never seen you this way.

do not pray for an easy life / search for the strength to walk the line / i see a hope that’s hard to find / so don’t run away.

this is the end.

Things were better, it could have been the end, things could have gone back to a better semblance of normalcy—I re-ignited the hope just to go into another battle.


Cars and the Pixies – The Rocket Summer

can i be honest? / i’m ready for this year to die. / can’t help but notice / every corner where something ain’t right / i’ll be honest, i’ve got the kind of mind right now / to not be modest / i’m sick of walking on eggshells / and i believe that life should be epic.

the cars and the pixies / and the cure ain’t gonna fix me.

September was when I finally realized that I needed the chaos that had been 2013 to this point to end—“ready for this year to die”. I knew that, slowly this time, I was on another decline health-wise and there was nothing I could do except wait—the hormone meds weren’t working and I was being told surgery to remove the fibroid was 2-3 months out—at the rate I was going, there was little to say I’d still be alive in 2-3 months. It was like being in a medical-system crapshoot.

the coin you call it / if heads we’re going back to the heartland / if tails it’s falling, you know, i think i could care less where it lands / i’m exhausted, and overwrought / i’m a message in a bottle, tossing, turning here out in the sea / i’ve been swimming so long, come on / i’m ready for you now to read me.

After nearly dying in September, after surgery… this was what became true:

this is the year we start living (the cure ain’t gonna fix me…) / who says it has to be a new year to start a new year?


Word Forward – Foo Fighters

goodbye, jimmy / farewell youth / i must be on my way, i’ve had enough of you […]

years that i’ve wasted, these i-owe-yous.

they’re just fucking words. / this is life or death. / it’s time to clear the air / you’d better save your breath. / say have you heard, the poison in my heart / the voices in my head? / years that i’ve wasted, these i-owe-yous.

i meant every word, for word, for word, for word.

but it’s only words. / i meant every word / they’re just fucking words.

This is life or death” is among the only way I can represent what September was. There really is no single song that can do that moment justice, because that same moment where I was lifted off of the ER bathroom floor and wheeled into resuscitation was the same moment that the good started happening—and with the recovery, the return to life, came the real battle. (There were many times where David Grey’s A Moment Changes Everything felt appropriate, but really, it was the collection of moments that lead to the resolution, not a single one).

The ridiculous thing about medicine is a lot of it happens based on words—it’s based on your ability to articulate a situation, and usually it’s based on the fact that they care only about your symptoms, not your feelings. I left an appointment where I dropped an f-bomb in my primary doctor’s office vowing never to return (which I did, three months later after a terrible experience with a potential new doctor), because it didn’t seem to matter that I’d almost fucking died that I wanted a new gynaecologist—or that I needed a new one. It didn’t matter how I felt–I’d wasted nearly a year of my life, I’d almost fucking died and I wasn’t into the excuses. A week later I did a less-fabulous job reaming out my now-former gynaecologist, because he was so sincerely apologetic. I gave him a bit of a diatribe, I meant every word, and I left. Which is huge when the past five months of my life had basically revolved around this man especially.  The thing is, I’ll never know if my story will change any of his patients’ outcomes—because they’re just fucking words, on my end and his.

 

New Skin – Incubus

Recovery, the healing process, is largely metaphorical based on a physical concept. It’s not physical, it’s all in the perception of the physical aspects. There’s little I can really articulate about the process, other than finding myself again—which is where this song comes in.

at first i see an open wound / infected and disastrous / it breathes chaotic catastrophe / it cries to be renewed: please renew me! / its tears are the colour of anger / they try to form a scab / to the touch, it’s stiff and resilient: underneath a new skin breathes.

it’s all been seen / with the exception for the right parts / but when will we be new skin?

as outwardly cliche as it may seem / yes, something under the surface says “c’est la vie” / it is a circle, there is a plan / dead skin will atrophy itself to start again / look closely at the open wound / see past what covers the surface / underneath chaotic catastrophe / creation takes the stage

dead skin will atrophy itself to start again

it’s all been seen / with the exception for what could be / when will we be new skin?

[…] fallacious cognitions / spewed from televisions / do mould our decisions / so stop and take a look / and you’ll see what i see now.

 

Not Right – The Rocket Summer

In more than one situation, but the medical situation that was 2013 being the prime example, it has occurred to me that the true impact of something doesn’t hit me for two months. That was early December (or, the very end of November if we want to be technical). It’s the point where I can’t distract myself any longer from what happened and I have to figure out a way to deal with it that works. I’m still figuring it out. I’m “blistered but I’m better”, I don’t know what it is, but off and on? I’m just not right

But I’ll get there.

I found this song literally last week on iTunes and those moments where oh my God, this is my life? I had one.

sundown’s coming / don’t let it stop you from nothing / cause ahead i see that there’s a light on, a right on / break down in pieces / tell me all your secrets / you won’t get lost, i promise / there’s a light on, right on / there’s a light on, right on.

lately, been meaning / to let you in on some feelings / here i am, do you see them? / shine that light on, right on / there’s a light on, right on / a safe place to admit . . .

that i am not right / i don’t know what it is, i’m just not right / i need someone to untangle a couple wires inside / if we’re honest, i am not quite right

shine your light onto my weaknesses.

something cut me / there’s bitterness in my bloodstream / been holding on to dead things / shine that light on, right on […]

so heaven help me / meet me as fast as you can / of the corner / of the state and the maze in my head.


Avalanche – Sons of the Sea

There are many things that bring experiences full circle—the fact that in writing an e-mail to Jay, who encouraged me to engage in the soundtrack project, I was shaken by Avalanche (oh, literality…), was that full circle experience. This happened a couple months ago, however, it never really left my head. In a way that needs little explanation, I’m closing off December of this hell of a year with Avalanche.

I saw none of it coming—most of it is just debris that I want to leave behind, but memories that will never leave. An “avalanche in the blink of a year”.

avalanche / in the blink of a year / tidal wave of debris / unrelenting and free / on my heels and i fear / time, like an arrow in my chest / sent across salty air / as a child i didn’t care / now i bleed like the rest.

but there’s art / in that wave of debris / most eyes will see a mess / but good things coalesce / when yeasayers can see

so i’ll stand / face that liquefied hill / what i fear now the most / is the spectre, the ghost / of my past it hurts still

avalanche / an emergency /  hence the chance to emerge / i’m a seed on the verge / of becoming a tree

 

And that . . . was 2013.

From the resolution to the avalanche . . .

It’s good to be alive.